How Many Bones Does A 13 Year Old Boy Have Loving My Christmas Girl Born Disabled by Congenital CMV

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Loving My Christmas Girl Born Disabled by Congenital CMV

Expecting our second child, who was due on Christmas Eve 1989, was a wonderful experience. What a Christmas present! But the moment Elizabeth was born on December 18, I felt a pang of dread. I immediately thought, “Her head looks so small—so misshapen.” Before she turned twelve, I found out why.

When the neonatologist walked into my room the next morning, he said, “Your daughter has profound microcephaly—her brain is extremely damaged. If she survives, she will never roll over, sit up, or feed herself.”

He concluded that Elizabeth’s birth defects were caused by congenital cytomegalovirus (CMV)—a virus that may have no symptoms for the mother, known as a “silent virus,” or may present with mild to severe flu-like symptoms.

The Centers for Disease Control and Prevention (CDC) states that approximately 8,000 babies are born with or develop permanent defects due to congenital CMV each year. It is the #1 viral cause of birth defects – more common than Down syndrome.

How and why did I catch this virus that I barely heard about? I read the CMV literature. It was stated that women who take care of small children are exposed to a higher risk of infection because it is often excreted in their saliva and urine. Pregnant women should avoid kissing them on the mouth and sharing towels and utensils with them. Hands should be washed thoroughly, especially after wiping the nose, changing diapers and picking up toys that have been in the mouth of a small child.

While I was pregnant with Elizabeth, I not only had my own child, Jackie, but also ran a licensed daycare center in my home. It made me sick what my lack of knowledge did to my little girl. In milder cases, children with congenital CMV may experience gradual hearing loss, suffer some visual impairment, or struggle with minor learning disabilities. But Elizabeth’s case was not mild.

“My life is over,” I thought. I asked God to heal her immediately, but since He didn’t, I begged Him to kill me and prayed that I would be crushed by an earthquake or struck by lightning. I just couldn’t handle raising such a tormented child, period. Although children are supposed to be a blessing, I felt far from blessed – I felt afflicted.

Fortunately, my husband Jim’s love for Elizabeth far outweighed his grief. He said, “She needs me. I want to protect her from this cruel world she was born into.” He was just like Charlie Brown with that poor Christmas tree.

“Oh God,” I prayed, “please help me to love Elizabeth too.”

At first, whenever I looked at Elizabeth, my heart would break all over again. I couldn’t see past her prognosis. The prognosis became more of a person than Elizabeth herself – it was a living being that tormented me mercilessly.

If I ever wanted to move forward and find happiness again, I knew I had to stop dwelling on the unanswered questions that kept popping up in my head like, “What will the future be like?”; “Why didn’t my gynecologist warn me about this?” and “Why would God let me get CMV?”

In those days after Elizabeth’s birth, all I could do was rock her and read the book of Psalms. Before Elizabeth was born, I couldn’t relate to the psalmists. I thought, “Wow, those people are really depressed!” Now I found comfort in their bitter questions, such as, “How long shall I bear pain in my soul and be sad all day long?” Knowing that I was not the only one who despaired of life made me feel less alone.

It took Elizabeth a few months to finally understand where my face was, but then one day she looked me straight in the eye and smiled – we finally connected! I gradually began to think, “If she doesn’t care that she is severely mentally retarded and, barring some miracle, will never walk or talk, why should I be so upset?” Maybe it was the sedative Valium, but the thought stuck with me, even when I no longer needed “mommy’s little helpers” to get me out of bed and into the shower.

Eventually, I no longer focused on Elizabeth’s disability, but on her abilities—her gratitude for being alive for one. Although she couldn’t raise her head or move her clenched fists to reach for the toy, she could hear and see—at least a little. She couldn’t sit up on her own, let alone crawl, but she could sit contentedly snuggled in my lap for hours and study my face with her big blue eyes framed by long dark lashes. When I smiled at her, she would smile back from ear to ear, letting me know that my happiness with her was all she needed to be content in this world.

It took about a year, but eventually I stopped praying for a nuclear bomb to fall on my house so I could escape the overwhelming anxiety over Elizabeth’s condition. Life has become good again. In the end, we were able to move forward as a happy, “normal” family. Even strangers played a role in lifting my spirits. One afternoon, struggling with Elizabeth’s wheelchair through the mud of a fair in upstate New York, I felt myself sinking into depression as the children stared at my little girl who couldn’t even hold her head up. “It looks funny,” the children said loudly to their embarrassed parents. In the middle of my dark thoughts, a heavily tattooed carnival man, who looked like he’d been drinking for years, ran out from behind his booth and came right up to me. My alarm melted into tears of gratitude when he handed me a large, brown teddy bear from his prize stash and said, “I want your daughter to have this.”

However, one lingering nagging problem began the day my older daughter, Jackie, asked, “Can I have a dog?”

I cringed. That dreaded day has come – all children inevitably seek one. And why not? Movie dogs like Lassie pull you out of burning buildings and keep you warm when you’re lost in a blizzard. But as we grew up, we learned the truth about them: They urinate on your new wall-to-wall carpets, dig holes in your leather armchairs to hide their rawhide bones, and bite the neighbor’s child.

“No, you can’t have a dog,” I said, preparing for the old argument. “We just can’t risk a dog around your sister.” I hated to admit it. I didn’t want him to blame Elizabeth for being so fragile. But taking care of Elizabeth was enough work without the addition of a dog that could playfully nibble on her.

I know! I’ll give Jackie a “lip split story.” This will convince her that we can’t have a dog near her sister.

“When I was 13,” I began, “I talked my grandparents into getting me a Weimaraner. His name was Bogie—short for Humphrey Bogart—and he was a snack. One day, my two-year-old cousin Suzannah was playing on the floor under the table with popsicle stick in her mouth. Bogie snapped the stick and bit her lip off! My grandmother took her lip off the carpet and wrapped it in a paper towel to take to the hospital. But it couldn’t be stitched back up. The surgeon repaired Suzannah’s face, but when we got home , my mother put Bogie in the back seat of the car and took him to the vet. I never saw him again. He went for a long walk ‘as they say in the movie Lady and the Tramp.”

I paused so Jackie could let the horror of the incident sink in.

But all she wanted to know was, “Where is Suzannah’s lip now?”

“God, I don’t know! The last time I saw her lip she was stuck to a napkin, all shriveled up and like a mummy on grandma’s bookshelf. But that doesn’t matter; don’t you see how dangerous a dog is to be to your sister? She can’t talk – how would she call us if she was in another room and the dog was bothering her?”

If there was a dog like Lassie out there, Elizabeth would be more than welcome, but I just couldn’t take any chances with an animal that can live up to 13 years.

After many tears and arguments, I finally made Jackie a promise: “If God brings one to our door, then you can have him. How come?”

“Really?” she asked, a smile spreading across her face.

“If one shows up at our door, I’ll assume it’s a sign from God that it’s a special dog who will be gentle around Elizabeth.”

“Mom I love you!” She threw her arms around my neck and kissed me on the cheek.

I felt bad – all I really gave her was a little hope. Jackie actually thought the dog was going to show up.

Maybe there was a compromise over the dog? There must be a pet that wouldn’t hurt Elizabeth. Goldfish? I mean, barring a freak accident, like flying out of the bowl and hitting Elizabeth in the face, the thing couldn’t possibly hurt her. Hamster? They’re fun – running around in a hamster wheel with no idea they’re going anywhere. Maybe Elizabeth could enjoy a hamster too. She couldn’t hold him, but it might be fun for her to watch him spin in his wheel.

Maybe a purring hamster would make Jackie forget about the dog – the way my parents thought getting Bogie would help me forget about boys…

Of course, what happens next is a completely different story!

Lisa Saunders

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